Approximately 25 percent of adults in the U.S. have one or more cognitive, visual, hearing, mobility, developmental, or intellectual impairments. In addition, many people will develop a disability at some point in their life and/or may be caring for a loved one with a disability. But the exclusion of people with disabilities from clinical trials persists, despite protections under the Americans with Disabilities Act Section 504 of the Rehabilitation Act, the Secretary’s Advisory Committee on Human Research Protections (SACHRP), and other federal and state guidance. In the recent Special Issue of Health Affairs on Disability and Health, Dr. DeCormier Plosky and colleagues found that protocol eligibility criteria frequently excluded people with disabilities. Few studies included either justifications for these exclusions or descriptions of accommodations that were offered, provided, or permitted. The Multi-Regional Clinical Trials Center of Brigham and Women’s Hospital and Harvard (MRCT Center) will launch the “Accessibility by Design (AbD) in Clinical Research Toolkit” in early May 2023. Dr. DeCormier Plosky presented key points and example tools from the AbD Toolkit, demonstrating straightforward steps that we all can take to support more equitable inclusion of persons with disabilities in research.
Learning objectives: After attending this webinar, participants will:
- Understand that the exclusion of people with disabilities from clinical research is counter to federal regulations and research guidelines, reduces access to the potential benefits of participation, limits study generalizability, and, without appropriate justification, is discriminatory.
- Learn about the themes of the Accessibility by Design in Clinical Research (AbD) Toolkit and general considerations for greater inclusion of persons with disabilities in clinical research.
- Consider how you may be able to apply key points and tools from the AbD Toolkit in your own studies, research, and work.
This is an event of the Office of Academic Clinical Affairs (OACA), hosted by the Center for Bioethics, and co-sponsored by the following U of MN Units: Center for Race, Indigeneity, Disability, Gender, and Sexuality Studies, College of Liberal Arts; Clinical and Translational Science Institute, Office of Academic Clinical Affairs; College of Pharmacy; Medical School; Program in Health Disparities Research, Medical School; School of Nursing; and School of Public Health.
Willyanne DeCormier Plosky, DrPH, is Acting Program Director at the Multi-Regional Clinical Trials Center of Brigham and Women’s Hospital and Harvard University, where she focuses primarily on initiatives within the Diversity, Equity, and Inclusion in Clinical Research portfolio. Previously she worked for Management Sciences for Health, the World Bank, Avenir Health, UNICEF, and USAID in the areas of health economics, maternal and child health, disability rights, HIV/AIDS, and humanitarian response. She also currently serves on the Board of Directors for All Farmers, an organization that supports refugee and immigrant families to access arable urban land and farmers' markets.